5NHS services

144.In this chapter we deal with trans people’s, and gender-variant children’s and adolescents’, experience of NHS services. This subject featured very prominently in our inquiry and is clearly a leading matter of concern for the trans community. We have found that the NHS is letting down trans people, with too much evidence of an approach that can be said to be discriminatory and in breach of the Equality Act.

145.Trans people experience worse health (both physical and mental) than the general population, which is likely to be substantially due to the direct and indirect effects of the inequality which trans people experience.150 Many witnesses told us that trans people face significant difficulties when accessing general NHS services. Jess Bradley, of Action for Trans Health, described a “lack of understanding and lack of cultural competency around trans issues” in the NHS.151

146.Trans people also have specific needs regarding Gender Identity Services, which provide: gender reassignment / confirmation treatment through Gender Identity Clinics (GICs); and the GIDS for children and adolescents. Here too, trans people face a range of problems with services as they are currently provided. We received significant evidence of the toll taken (in poor mental health, self-harming and suicide attempts) by untreated gender dysphoria. We agree with Dr John Dean, Chair of the NHS National Clinical Reference Group for Gender Identity Services, that: “not treating people is not a neutral act—it will do harm.”152

General NHS services

147.During our inquiry we heard evidence that trans people face discrimination in accessing general NHS services. Terry Reed, of GIRES, explained that trans people were often nervous about accessing services because they were “not treated sympathetically [or even] politely”.153 Jess Bradley told us:

we do see a lot of trans people being denied treatment, whether that is on the basis that they present at a mental health clinic and the mental health clinicians think, “Okay, this is too complicated for us. We need to pass this on to somebody else.” You find a lot of trans people are passed from pillar to post.154

148.Dr James Barrett, President of the British Association of Gender Identity Specialists (BAGIS) stated that: “The casual, sometimes unthinking trans-phobia of primary care, accident and emergency services and inpatient surgical admissions continue[s] to be striking.”155

149.According to CliniQ, a specialist sexual health and wellbeing service provider for trans people:

there is at best considerable ignorance and at worst some enduring and mistaken and highly offensive stereotypes about trans people among the public at large, amongst whom we must unfortunately number some health professionals.156

Brook, a provider of sexual health and wellbeing services and advice for young people, also told us that “prejudice against trans people among medical staff” was one of the reasons for poor health outcomes in trans people.157

150.Dr Dean reminded us that it had not been so long since lesbian, gay and bisexual people regularly reported significant difficulties when accessing the NHS:

I hope it is not going to take 10 years to get to the same situation where being trans or nonbinary does not result in an eyebrow being raised when it is not the most important thing about that person’s life; the person is the most important thing. That societal change needs to be led by the NHS.158

151.The Parliamentary Under-Secretary of State for Public Health, Jane Ellison MP, emphasised to us that “the NHS is a needs-driven service”, indicating that the more the needs of trans patients were talked about the better they could be addressed.159 She also mentioned the creation by NHS England160 of the Transgender and Non-Binary Network.161

152.NHS England itself told us about this in written evidence:

Historically, transgender and non-binary people have reported poor experience of engagement, with the group becoming “hidden”. NHS England has therefore established a Transgender and non-binary network with over 150 members. Five workshops have been held with the network since June 2013 with the next one planned for December 2015. The group is organised and facilitated by the NHS England Public Participation Team with support and contributions from colleagues in Highly Specialised and specialised Commissioning, NHS Clinicians, transgender and non-binary people, organisations that represent them and providers.162

General Practitioners’ attitudes towards trans patients

153.There appeared to be particular problems with the attitude of some GPs. This can cause significant difficulties given their role as “gatekeepers” to other NHS services, including Gender Identity Services,163 as well as their role in providing continuing hormone treatment as part of gender reassignment / confirmation treatment. Dr Barrett reported:

A matter of serious day-to-day importance at a primary care level is the persistent refusal of some General Practitioners to even make referrals to gender identity clinics.164

154.The trans community organisation the Beaumont Society told us about:

The astonishingly negative reaction by a few GPs when a trans person appears for the first appointment to ask for an assessment to begin. “You’ll be taking money away from more deserving cancer patients” is one quote that we have heard.165

155.Joseph Daniell told us about his experience:

The terms “gender dysphoria” and “transgender” are not fully known throughout the NHS services, or the treatment for such issues. When I first went to my GP, in November 2014, I had to explain what both of these terms meant and had to advise him on where to refer me to next. However he never referred my case on and I had to go back and see another GP and ask her to refer me on. This took a while too as she had no clue who she was meant to refer me to. After some waiting she finally found out and referred me onto the local mental health specialist. I received an appointment in March and she was much more helpful, however she did not know the treatment protocol either and I had to explain it to her.166

156.Jess Bradley told us that “A lot of GPs deny healthcare to trans people illegally, based on the fact that they do not agree with the choices that they have made.”167

157.Michael Toze wrote to us that:

Many GPs and other local health services have not been trained in trans health issues and do not understand the new referral pathways [into Gender Identity Services]. I would estimate that I talk to 40–50 people a year who have had their referral delayed or refused for spurious reasons, typically that the GP believes local funding needs to be arranged or that a mental health assessment needs to be carried out, neither of which is true in England since April 2013.168

158.Devi Dunseith likewise told us:

In spite of the fact that gender dysphoria is no longer recognised as a mental health condition, many GPs will not refer to a GIC without assessment from a mental-health team (who are not in any way trained to understand or deal with gender dysphoria and gender issues).169

159.NHS England, which is responsible for commissioning (i.e. planning and purchasing) primary care (including GP services) and specialist services (including Gender Identity Services), admitted to us that there was an “Unwillingness by some general practitioners to prescribe and monitor hormone therapy”.170

160.Dr Barrett, of BAGIS, told us that this unwillingness:

is most disastrous when the General Practitioner concerned sits on an important committee and sets the policy for a wider area. One such General Practitioner sat on the committee covering all of one of the Home Counties and as a consequence not a single General Practitioner across the entire county [of] Buckinghamshire is “allowed” to prescribe for any trans person, ever, including after discharge and into old age.171

161.A particular issue is that trans people’s health care needs are too often reduced to a function of their trans status, as Jess Bradley explained:

We call it the “trans cold”: if you go to your doctor’s with a cold, it will be a trans cold.172

She also told us:

Trans people, when they are at the end of their pathway, want to be released from a GIC clinic on to being within the GIC’s care, because they know that, when they go to their GP, the GP could easily just turn around and say, “Actually, no, we need to talk to your GIC.” It is like, “Well, I was released from the GIC into your care three years ago. Why do I have to talk to them?”173

162.Terry Reed told us that there was “a fixation that [being trans] is the important thing about this person”, and told us that a GP might write a whole page about a person’s gender background even when it was completely unrelated to their treatment. She had even heard of an individual with possible cervical cancer being referred back to a GIC for a further psychiatric assessment before being sent to an oncologist.174

163.Dr Dean said:

My experience, working with GPs and secondary care physicians, is that, overall, people working in the service try to be empathic; they are certainly sympathetic, but they lack a great deal of background knowledge about gender incongruence and dysphoria. It is something that is not covered in any detail in medical training […] medical students are very interested in what we do, but they get very little information about gender identity, gender identity developments and the differences and different developmental experiences people have that sometimes lead them to need to use our services. Overall, they are empathic and try to be helpful, but are hampered by a lack of knowledge about how to do that and about the services that are available.

164.Dr Dean thought that patients’ perceptions might also be coloured by interacting with:

managers, administrative staff and all of the other important contributors to the NHS overall in hospital and out-patient services, who sometimes lack understanding of and sensitivity to the important issues and need to know more so that they can work with respect and understanding of differences related to gender incongruence.175

165.The Royal College of GPs (which sets standards and supervises training for doctors within the specialism) agreed that GPs were “overall empathetic but that their knowledge of how to best support transgender patients could be improved”. To help fill this gap, the College had in July 2015 launched an online training module on Gender Variance. The College in Northern Ireland had also produced guidance (promoted to all members of the College) on caring for trans patients.176 In addition, the College was working with GIRES to produce e-learning modules.177

166.The College also explained to us how GPs might be coming into conflict with trans patients by practising in ways that were entirely appropriate but might be perceived as obstructive or unhelpful by the patient. This might occur, for instance, when a patient who is experiencing a long wait for their first appointment with a GIC asks a GP for interim “bridging” hormones but the GP does not feel able to prescribe under the circumstances.178 However, the UK Intercollegiate Good Practice Guidelines for the Assessment and Treatment of Adults with Gender Dysphoria (developed by the Royal College of Psychiatrists, and endorsed by other Royal Colleges) advise that “bridging” hormones can be prescribed where appropriate “as part of a holding and harm reduction strategy”. It is advised that practitioners “must consider the risks of harm to the patient by not prescribing hormones” where the patient has begun self-medicating.179

167.Regarding the specific role of GPs in providing care for trans people, the Minister told us:

we ask a great deal of GPs and realistically we cannot expect every GP to be an expert on everything, particularly on things that they will statistically see far less often. We would expect them to have a good level of awareness, the right approach and attitude and, crucially, understanding of how they can refer people to the right support.180

168.We also heard from Will Huxter of NHS England.181 He stressed that it “is a relatively infrequent thing” for a GP to treat a trans patient.182

169.In written evidence, NHS England conceded that there appeared to be a particular problem with some GPs who refused:

to prescribe [hormone therapy] to transgender and non-binary people, and to undertake assessments and investigations, even though they have been advised to do so by physicians in the specialist gender identity clinics.

170.NHS England has responded to this issue by publishing:

a Specialised Services Circular (SSC1417, March 2014) which is consistent with the General Medical Council’s good practice guidance in Prescribing and Managing Medicines and Devices 2013. The circular clarifies that general practitioners are responsible for the prescription of hormone therapy as recommended by the specialist gender identity clinics; for patient safety monitoring procedures; for provision of basic physical examinations within the usual competences of GPs; and for blood tests as recommended by the specialist gender identity clinics.183

Education and training of doctors

171.The General Medical Council (GMC) is the independent statutory body which regulates the medical profession in the UK. The GMC sets standards for the delivery of medical education and training; maintains the register of doctors; and issues licences to practice. As part of its licensing function, it sets requirements for the Continuing Professional Development (CPD) that doctors must undergo as part of revalidating their licence.

172.Dr Dean told us that “the General Medical Council would have significant influence over” the inclusion of trans issues in medical training, “because they provide guidance as to what should be contained within the curriculum”:

Awareness of gender identity and gender identity development—distinguishing it from sexual identity, noting the interactions between the two—should be a fundamental part of medical training. That is going to take a long time to feed through into those who are currently in practice, so it is important that it is incorporated into continuing professional development activities for existing practitioners.

173.Dr Dean acknowledged that trans issues could easily be crowded out by the many other topics that doctors needed to cover in their CPD. It was “difficult to get them to prioritise it until they are confronted with a patient for the first time”—but this was happening with increasing frequency and it was no longer appropriate to say “This is a terribly rare condition. It is very specialised. I do not have to know about it. It is something for specialists.”184

174.The GMC itself told us that it sets standards and outcomes for undergraduate and foundation training; and standards and requirements for postgraduate training. Curricula and assessment tools must fulfil these, but their actual content is owned by the medical schools, foundation schools and Medical Royal Colleges or faculties. The Council is working with the Academy of Medical Royal Colleges to develop a framework for generic professional capabilities, which will “identify, simplify and clarify the core professional values, knowledge, skills and behaviours” for doctors, to reduce variability in the postgraduate curriculum in this regard.185

175.On the matter of training for doctors, the Minister and Mr Huxter told us about work with the Medical Royal Colleges, Health Education England,186 the GMC, the British Medical Association187 and others around giving guidance and support to primary-care practitioners in caring for trans patients.188

Professional regulation of doctors

176.The EHRC further told us about the GMC’s role as a professional regulator in addressing cases of alleged inappropriate practice (including transphobic attitudes and behaviour), on the part of doctors:

Following a survey of problems with healthcare services, resulting in 98 complaints, a dossier of 39 cases warranting further investigation was submitted to the General Medical Council (GMC) in 2013. Those cases involved allegations of sexual abuse, physical abuse, verbal abuse, inappropriate and sometimes damaging treatment, treatment withheld, threats of withholding treatment, poor administration, and acting against patients’ best interests.189

177.There is a strong perception in the trans community that the GMC failed in its duty to take these complaints seriously; and it was suggested to us that the Council needed to change its processes accordingly.190

178.The GMC explained to us that of the 98 cases that were initially brought to its attention, 42 involved allegations which appeared potentially serious enough to warrant further investigation and the complainants were invited to complain direct to the GMC. Any complaints that were made as a result of this would have been passed direct to the GMC’s triage department and so it is not possible to track all complaints from this group in isolation from others.

179.The GMC has, though, identified three complaints that were submitted as a direct result of the survey, since the complainants specifically referred to the survey in their complaint. One of these was closed as the doctor involved could not be identified. One was closed as the allegations related to incidents occurring too long ago. One was investigated but closed with no further action because it did not meet the GMC’s thresholds for action (which relate to “putting the safety of patients, or the public’s confidence in doctors, at risk”).

180.The Council also explained that:

For us to pursue a complaint, we will also usually need the patient to identify themselves and to consent to disclosure of their complaint to the doctor. This is an unavoidable part of due legal process, but we acknowledge it may be a disincentive to some to pursue complaints, particularly in sensitive aspects of medical treatment.191

181.We welcome the evidence we received from the Parliamentary Under-Secretary of State for Public Health regarding the importance of understanding and addressing the needs of transgender patients. And the creation for this purpose by NHS England of the Transgender and Non-Binary Network is a commendable step.

182.However, it is clear from our inquiry that trans people encounter significant problems in using general NHS services due to the attitude of some clinicians and other staff when providing care for trans patients. This is attributable to lack of knowledge and understanding—and even in some cases to out-and-out prejudice.

183.GPs in particular too often lack an understanding of: trans identities; the diagnosis of gender dysphoria; referral pathways into Gender Identity Services; and their own role in prescribing hormone treatment. And it is asserted that in some cases this leads to appropriate care not being provided.

184.The NHS is failing in its legal duty under the Equality Act in this regard. There is a lack of Continuing Professional Development and training in this area amongst GPs. There is also a lack of clarity about referral pathways for Gender Identity Services. And the NHS as an employer and commissioner is failing to ensure zero tolerance of transphobic behaviour amongst staff and contractors. A root-and-branch review of this matter must be conducted, completed and published within the next six months.

185.The General Medical Council must provide clear reassurance that it takes allegations of transphobia every bit as seriously as those concerning other forms of professional misconduct.

Gender Identity Clinics (adults)

186.As noted above, the commissioning of Gender Identity Services is currently undertaken by NHS England. The providers are seven GICs, of varying sizes, each run by an NHS Mental Health Trust192

187.Dr Dean told us:

All seven gender clinics in England arose out of the special interest of an individual a long time in the past. There has not been a lot of planning of their development, and there certainly is no training pathway for medical practitioners or others who work in this field. It is very much learning by apprenticeship, working with other people and observing. People working in this field generally in the past have come primarily from psychiatry, but more recently genitourinary medicine and family medicine as well.193

188.Where patients require genital (reassignment / reconstructive) surgery, they are referred on by the GICs to one of three providers who are contracted to provide surgical services.194

189.Demand for the GICs’ services is growing at a significant rate, with referrals increasing by an average 25–30 per cent a year across all the clinics.195

Treatment protocols

190.During our inquiry we heard evidence that there are issues around the treatment protocols which the NHS operates.

191.GIRES explained to us that homosexuality was once classified as a disease, until its removal from the World Health Organization (WHO) International Classification of Diseases (ICD) in 1992. Attitudes in respect of gender identity are now likewise shifting. Under the ICD, “transsexualism” has been, and still is, classified under “Mental and Behavioural Disorders”. Consequently, “treatment in the UK has, typically, been led by psychiatry.” However, the WHO is expected to revise the ICD accordingly. The “psychopathological model” of trans identity will be “abandoned, in favour of a model that reflects current scientific evidence and best practice”. This will accord with the Standards of Care promulgated by the World Professional Association for Transgender Health (WPATH), which describe trans identity as “a common and culturally diverse human phenomenon that should not be judged as inherently pathological or negative”.

192.At the same time, however, GIRES notes that “Removal altogether from the ICD [as occurred with the depathologisation of homosexuality] is not an option, since gender dysphoria frequently requires medical interventions.”196

193.The interim Protocol and Service Guideline is quite clear that gender dysphoria is not synonymous with having a trans identity as such:

Gender dysphoria refers to discomfort or distress that is caused by a discrepancy between a person’s gender identity and that person’s sex assigned at birth (and the associated gender role and / or primary and secondary sex characteristic). Trans and gender variant people are not necessarily gender dysphoric.197

194.For a patient to be able to access most forms of gender reassignment / confirmation treatment, two clinicians, one of whom must be medically qualified, have to agree a diagnosis of gender dysphoria. Assessment, diagnosis and confirmation in relation to gender dysphoria “must be by a health professional who specialises in gender dysphoria and has general clinical competence in diagnosis and treatment of mental or emotional disorders, for example psychiatrists and psychologists” (in accordance with WPATH standards).198 Dr Dean further explained to us:

There is a period of assessment, which would normally consist of at least two consultations. There is a huge amount of information to take in from the patient, to understand about their gender identity-relevant health, their networks of support and what their aspirations are, and to communicate to them the risks, benefits and limitations of the various interventions that they want […] It is difficult to give a standard case, but there will be an assessment process, which would usually involve two clinicians and probably take place over a period of about three months, at the end of which, if they wanted hormone therapy and they were of the age of majority, had the correct etc., then we would recommend it.199

195.The Intercollegiate Good Practice Guidance explains that the purpose of requiring clinical opinions is to ensure that: there is “persistent and well-documented gender dysphoria”; the patient has the “capacity to make fully informed decisions and to consent to treatment”; and any “significant medical or mental health concerns” are “reasonably well controlled”.200

196.However, we heard the view that the requirement for clinical assessment is an unnecessary obstacle to treatment which causes delay and distress—and represents the continuation of outdated attitudes of pathologisation and medical paternalism. Michael Toze told us:

Assessment procedures in clinics are not transparent and not consistent, and patients are aware of this through informal discussion. For example, Nottingham GIC recently sent new patients a form asking them what video games they play. It is not clear why this is relevant to their assessment or care, and if it is relevant, why other clinics are not asking […] Some clinics ask patients highly personal questions about sex; some ask if patients have gay relatives; some have refused treatment for people who are full-time carers and hence unable to work. Other clinics do none of these things. Because clinics control access to treatment, patients do not feel empowered to challenge being asked irrelevant and highly personal questions, or having judgements made about their lives.201

197.A further precondition for genital (reassignment / reconstructive) surgery is that the patient must undergo at least a year (“typically 12 to 24 months”) of “Real-Life Experience”, i.e. living “in role” in their acquired / affirmed gender. The interim Protocol and Service Guideline explains the rationale behind this as follows:

The social aspects of changing one’s gender role are usually challenging—often more so than the physical aspects. Changing gender role can have profound personal and social consequences, and the decision to do so should include an awareness of what the familial, interpersonal, educational, vocational, economic, and legal challenges are likely to be, so that people can function successfully in their gender role.202

198.Dr Dean told us that the Intercollegiate Good Practice Guidance sets out in this regard:

broad guidelines that need to be interpreted on an individual basis, because it should not be one size fits all […] They were developed by a group of representatives of several professional organisations and medical royal colleges, not just medical organisations, and representatives of the patient community and their supporters. Within that document is the guidance that patients, generally speaking, should have a period of 12 months living in a congruent gender role before they are referred for genital reconstructive surgery, and we follow that, but it does have to be interpreted individually […] [T]here is quite considerable diversity of opinion between different clinicians and different clinics […] As there is not a standard approach or a standard training in how the guidelines are interpreted, there is certainly room for variation in interpretation, so, where you go to different clinics, you may get a different answer with respect to Real-Life Experience.203

199.We heard strong objections to this requirement. Action for Trans Health told us that it meant “forc[ing] trans people to conform to arguably outdated norms of gender and sexual orientation and behaviour in order to receive treatment”.204 There are particular issues around the imposition of this requirement on non-binary people, whose gender presentation by definition does not conform to the norms associated with conventional male or female identity.205

200.A number of witnesses argued for the “informed-consent model”, which is said to be used by some private providers of gender-reassignment / confirmation treatment in the USA. This entails imposing a minimum of clinical preconditions for treatment, on the basis that if the patient is able to give informed consent their wishes should be treated as paramount.206

201.Counter-arguments to this approach focus on: the requirement on clinicians to observe established clinical, professional and ethical standards (including those set by WPATH); and the need to ensure that finite NHS resources are spent appropriately and effectively. In addition, the informed-consent only model is not used in any other area of practice within the NHS.207

202.Issues regarding appropriate clinical practice in this regard have been tested by two cases brought to the GMC, as the Council explained in evidence to us. In one of these cases, a doctor’s:

fitness to practise was found impaired in 2007 in relation to complaints that he had initiated hormonal and surgical gender reassignment treatment in five patients without sufficiently careful and thorough initial investigation and treatment. His registration was made subject to conditions; he has since voluntarily removed his name from the Medical Register.208

203.When we asked the Minister and Mr Huxter, of NHS England, about these issues, they replied that they were unable to comment on clinical matters and would have to seek advice from clinicians on the reasoning behind the current protocols. We subsequently received a further written submission from NHS England explaining that the current clinical protocols are in accordance with UK Intercollegiate Good Practice Guidelines and WPATH clinical standards.209

204.The Minister and Mr Huxter did indicate that the current interim Protocol and Service Guideline is under review and is open to challenge and feedback from “critical friends” and others.210

205.NHS England later clarified in writing that:

The draft service specification for adult services was subject to public consultation earlier in 2015. It will be tested with people who use transgender services, the Transgender Network, at its next meeting on 3 December 2015 with a view to delivering a final draft product to NHS England by March 2016.

206.NHS England further told us that:

A follow-up to the multi-agency symposium that was held in June 2015 will be held on 27 January 2016. This will focus on the development of a national workforce and training plan for gender identity services, the relationship between specialised services for transgender people and primary care services, and improving the patient experience for transgender people across the wider NHS. This will provide an early opportunity to consider some of the concerns the Committee expressed with regard to the attitudes of some NHS staff to transgender people.211

207.Part of the NHS’s duty regarding equality for trans people is its obligation to provide appropriate Gender Identity Services to meet the needs of the trans community.

208.We strongly welcome the long overdue trend towards the depathologisation of trans identities (decades after the same happened in respect of lesbian, gay and bisexual identities) and the explicit acknowledgement within Gender Identity Clinics that the treatable condition of gender dysphoria is not synonymous with trans identity as such. This approach must be reflected in all areas of Government policy on trans issues, not least in relation to gender recognition.

209.We are concerned that Gender Identity Services continue to be provided as part of mental-health services. This is a relic of the days when trans identity in itself was regarded as a disease or disorder of the mind and contributes to the misleading impression that this continues to be the case. Consideration must be given to the transfer of these services to some other relevant area of clinical specialism, such as endocrinology (which deals with hormone-related conditions), or their establishment as a distinct specialism in their own right.

210.We heard that there are serious concerns within the trans community regarding the treatment protocols that are applied by Gender Identity Services, particularly in respect of clinical assessment prior to treatment and the requirement to undergo a period of “Real-Life Experience” prior to genital (reassignment / reconstructive) surgery. This requirement is seen as reflecting outdated, stereotyped attitudes to male and female gender identity.

211.Many people now favour the adoption instead of a model involving only the granting of informed consent, which is said to be used by some providers of private care in the USA.

212.However, we are unconvinced of the merits of the proposed informed consent-only model. While there is a clear case for the granting of legal gender recognition on request, with the minimum of formalities, this approach is less appropriate for a medical intervention as profound and permanent as genital (reassignment / reconstructive) surgery. Clinicians do have a responsibility to observe ethical and professional standards, including their duty of care towards patients. In this particular area of medicine, appropriate practice also entails paying due regard to the internationally recognised guidelines of the World Professional Association for Transgender Health. In addition, clinicians practising in the NHS have a duty to ensure that the service’s finite resources are spent appropriately and effectively. All of the foregoing obligations are incompatible with simply granting on demand whatever treatment patients request.

213.The issues that exist around clinical protocols must instead be addressed through the consistent application of clear and appropriate standards across the Gender Identity Clinics. The situation described to us by Dr John Dean, Chair of the NHS National Clinical Reference Group for Gender Identity Services, whereby “there is not a standard approach or a standard training in how the guidelines are interpreted”, is clearly unacceptable and must change.

214.The Protocol and Service Guideline must make explicit the right of patients to be fully involved in their treatment and to exercise full personal autonomy in respect of their gender identity and presentation. It must be stipulated that treatment criteria are to be exercised flexibly case-by-case on that basis.

215.Assessment prior to treatment must be undertaken in order to meet clinically necessary criteria regarding the patient’s diagnosis, ability to consent to treatment and (physical and mental) fitness for treatment. The requirement to undergo “Real-Life Experience” prior to genital (reassignment / reconstructive) surgery must not entail conforming to externally imposed and arbitrary (binary) preconceptions about gender identity and presentation. It must be clear that this requirement is not about qualifying for surgery, but rather preparing the patient to cope with the profound consequences of surgery.

Capacity and quality of services

216.In our inquiry we also heard of problems in the quality and capacity of NHS services. In evidence to us, NHS England admitted that the following problems existed:

inequitable access and variability across the GICs;

poor patient experience, including communication;

capacity pressures;

workforce pressures; and

long waiting times for initial assessment and genital reconstruction surgery (with a shortage of specialist surgeons).212

217.Unacceptably long waiting times for initial appointments at GICs are clearly endemic. Steve Shrubb, the then Chief Executive of West London Mental Health NHS Trust, which runs by far the biggest GIC (the Charing Cross Clinic), told us that “People are waiting currently between 12 and 18 months.”213 GIRES told us:

Recent reports indicate waiting times of 2–3 years for access to some of the adult clinics. The waiting time for genital surgery for trans women is 22 months; without additional services being commissioned, the predicted waiting time is 42 months by 2017 (NHS England).214

218.In addition, we heard about the uneven geographical distribution of GICs, meaning that many people have to travel long distances in order to access treatment.215

219.Poor quality administration is also widely encountered in GICs. Jess Bradley, of Action for Trans Health, told us that the quality of administration was “just completely routinely rubbish”.216

220.Waiting times for initial appointments are in breach of patients’ legal entitlement, under the NHS Constitution, to have their first appointment in a specialist service within 18 weeks of referral. Only in January 2015 did the NHS accept that this principle actually applies to Gender Identity Services.217

221.A further issue that was drawn to our attention concerned the fact that some elements of the gender identity pathway (involving “non-core services”) had to be commissioned by local NHS Clinical Commissioning Groups rather than NHS England. The fact that this made it difficult to access some secondary (but, to the patients concerned, still vital) elements of treatment was a real source of distress for some.218 Dr Dean told us that this had arisen because of an unforeseen conflict between NHS England’s Interim Gender Dysphoria Protocol and Service Guideline and other policy on commissioning by CCGs. He was confident that the new definitive Protocol and Service Guideline would resolve the matter.219

222.NHS England told us in written evidence that, after hearing about the shortcomings of Gender Identity Services from the NHS Citizen Assembly, it had set up:

a dedicated working group, accountable to NHS England’s Specialised Commissioning Oversight Group to identity and implement solutions to the problems that it heard.220

223.Particular attention, we were told, is being paid to the issue of waiting times:

NHS England has worked closely with the three providers of genital reconstruction surgery to model the capacity requirements to begin to reduce waiting times for surgery to below 18 weeks. In 2015/16 NHS England has invested an additional £4.4m in genital reconstruction services. We are funding the surgical providers at maximum capacity, which means that the most significant constraint in reducing waiting times more quickly is due to workforce rather than financial constraints […] We also know that there are long waiting times for referrals into the gender identity clinics for initial assessment. In the spring of 2015 we embarked upon an ambitious programme of work to identify the reasons for bottlenecks in the patient pathways; to model scenarios for the clinics in meeting the 18 week standard, and expected growth in demand.221

224.The shortfall in the skilled workforce necessary to address the volume of demand for the service was, NHS England told us, a matter for Health Education England.222

225.When we questioned Ms Ellison, she told us:

the NHS is definitely on a journey here [...] there is a real openness to improvement. There is an understanding and acceptance that current services are not good enough and there are some plans in place to improve that.223

226.However, Mr Huxter, of NHS England, seemed more equivocal about criticisms of the quality of the service:

I am well aware of individuals who have raised with me and with other commissioners concerns about services, but I was reviewing data from the West London Mental Health NHS Trust gender identity clinic that had been completed by hundreds of their patients that were reporting very high levels of contentment. I do not dispute that there are individuals and groups of individuals who are not experiencing what they would wish.224

227.Mr Shrubb told us:

It never ceases to amaze me, the level of the quality. We serve 2,500 patients. Their views on the clinical quality were extremely high. They had slightly lower views on the administrative quality, if I am honest. I think the quality in real terms is very high, but we really do not have a good grip on the data […]225

228.We received evidence drawing our attention to the possibility of an alternative model of commissioning and provision, involving the delivery of elements of the service away from GICs, at local level and using more non-NHS providers. This had been tried at Calderdale, in Yorkshire (prior to NHS England taking over commissioning), reportedly with some degree of success.226

229.The evidence is overwhelming that there are serious deficiencies in the quality and capacity of NHS Gender Identity Services. In particular, the waiting times that many patients experience prior to their first appointment (in clear breach of the legal obligation under the NHS Constitution to provide treatment within 18 weeks) and before surgery are completely unacceptable.

230.We are also concerned at the apparent lack of any concrete plans to address the lack of specialist clinicians in this field. This will be a serious obstacle to addressing the lack of capacity, which growing demand for the service is sure to exacerbate, and cannot be ignored. The Department of Health must say in its response to us how it will work with Health Education England and other stakeholders to ensure that this is addressed.

The Tavistock Clinic (children and adolescents)

231.The GIDS, known as the Tavistock Clinic, is a highly specialised clinic for young people presenting with difficulties with their gender identity, including gender dysphoria and other conditions. The Tavistock Clinic is the only specialist service in the UK providing early-intervention treatment for children and young people. It operates from two main bases (in London and Leeds); and regular outreach clinics are held (in Exeter, Barnstable, Bath, Bristol and Brighton).227

232.The Clinic itself told us:

The GIDS interdisciplinary team comprises professionals with specialist child and adolescent training from a range of disciplines including psychiatry, clinical psychology, family therapy, social work, psychotherapy and adolescent endocrinology. Clinicians in the service accept that gender non-conformity cannot be explained adequately within any monolithic theoretical model, and that explanations are probably multi-factorial.228

233.Demand for the clinic’s services is growing rapidly, with referrals increasing by 50 per cent a year in recent years (and at an even greater rate in the current year).229 While the majority of referrals involve young people aged between 14 and 16, the service is seeing a marked increase in the number of younger (pre-pubertal) children being referred (even as young as four)—although the numbers remain small.230

234.GPs can refer patients directly to GIDS, but referral takes place chiefly through local Child and Adolescent Mental Health Services (CAMHS). As with adult Gender Identity Services (see above), referral pathways appear to be made problematic by a lack of understanding of gender-identity issues in the wider NHS. Susie Green, the Chair of Mermaids (which represents parents of gender-variant children and adolescents), told us:

the GP will turn around and say, “There is nothing you can do until you are 18” or, “No, we cannot refer you to any specialist, because we do not know about it”, so they will refer them to CAMHS.231

She continued:

You will then have a six month wait to be seen by a CAMHS counsellor, regardless of whether you are suffering from depression or self harming, etc., and then you get to CAMHS and they go, “We do not know anything about gender, so we are not dealing with it either.”

Ms Green also told us that some staff at the Tavistock Clinic itself are unaware that direct referral from a GP is possible.232

235.While GIDS does not suffer from the long waits associated with the adult service, there still appear to be some problems in this regard. Mermaids reported the results of a survey in 2014 of parents of children and adolescents with gender dysphoria:

27% of all those who responded had waited over 18 weeks for their initial assessment with the GIDS. Parents reported that the wait for the first appointment had a negative impact on the mental health and wellbeing of 31 (77.5%) of the 40 young people included in the survey; three (7.5%) had attempted suicide whilst on the waiting list to be seen for the first time.233

236.The Tavistock Clinic explains the basis of its treatment model as follows:

The appropriate care of Gender Dysphoria in children and adolescents is contentious and debated in the absence of an adequate evidence base. It is not possible with any certainty to predict the outcome of gender identity development and the evidence available suggests that for the majority of pre-pubertal children their gender dysphoria does not persist into adulthood […] The service aims to ameliorate the potential negative impact of gender dysphoria on general developmental processes. We endeavour to help young people and their families manage the uncertainties inherent in the outcome of gender dysphoria and provide on-going opportunities for exploration of gender identity and support.

Each patient has an individual treatment plan, tailored to meet their particular presentation and needs.234

237.The treatment provided by GIDS does not include any form of irreversible (surgical) physical intervention. It does, however, include reversible forms of such intervention for adolescents aged younger than 16; and mostly-reversible forms of intervention for adolescents who are aged 16 and over.

238.Firstly, hormone-blocking medication is available from the onset of puberty (regardless of chronological age); this involves pressing the “pause button” in the process of puberty, allowing the young person concerned the opportunity to address their gender identity issues without the distress that puberty can cause in such circumstances. Pubertal-postponement treatments also, by preventing the development of secondary sexual characteristics, obviate the need for some surgery and other treatments in that regard if the patient later undergoes gender reassignment / confirmation surgery and other treatments.

239.Secondly, cross-sex hormone therapy is available from the age of 16, but only after at least 12 months of hormone-blocking treatment.235 This form of medication will bring secondary physical sexual characteristics into line with the young person’s acquired / affirmed gender. Some of the changes brought about by cross-sex hormone treatment are not reversible, for example the breaking of the voice for trans men and breast growth in trans women. However, other aspects, for example fertility, hair-loss and hair-growth, are reversible within the early years of treatment.

240.Both these forms of treatment are only provided after a substantial period of assessment. All patients are assessed over the course of between three and six appointments with one or two mental-health professionals from the clinic’s team. If the young person is deemed suitable for pubertal-postponement treatment, a further (endocrinological) assessment takes place. The interval between appointments is roughly monthly; they can, however, be less frequent if capacity is strained, which can occur with the rapid growth in demand.236

241.A number of trans advocacy groups told us that, under these current treatment protocols, patients could not access treatment quickly enough. Mermaids said there was a significant risk of self-harm or suicide where hormone treatment is not yet being given;237 they drew attention to evidence that the attempted suicide rate among young trans people is 48 per cent.238 We were also told that, under current protocols: the principle of Gillick competence is not observed in respect of children aged under 16; and parental wishes are not heeded.239

242.We further heard that the fixed requirement for adolescents to undergo at least 12 months of pubertal-postponement treatment prior to being prescribed cross-sex hormones is arbitrary and unreasonable. It means that someone who is quite certain of their gender identity can be placed in a position of not maturing physically at the rate of their peers just as they are entering adulthood. This can result in isolation and prejudice, leading to significant distress and harm.240

243.Mermaids further argued that: pubertal-postponement treatments should be made available to older children (aged 16 and 17) as well as younger ones; and young people should be included in decision-making about both forms of hormone treatment.241

244.Bernadette Wren, Head of Psychology and Associate Director at the Tavistock Clinic, told us that its treatment protocols are based on WPATH guidelines which are almost universally observed in Europe.242 The protocols were subject to change (for instance, the age at which puberty-blockers were prescribed had already been lowered) and the service specification was currently under review by NHS England.243

245.The Tavistock Clinic is aware of an important Dutch long-term study which apparently shows the benefits of early intervention in gender-dysphoric children, with “a staged programme of puberty suppression, cross-sex hormones and gender reassignment surgery” at appropriate ages. This study though, involves a selected group of children showing consistent gender dysphoria from an early age and meeting other treatment criteria 244

246.Another problematic area, we heard, was the transition to adult Gender Identity Services (at the ages of 17 and 18), with a lack of continuity of care for those patients involved, which can lead to their facing a long hiatus in their care as they sit on a waiting list to enter the adult service.245 The NHS Gender Identity Services Clinical Reference Group has recommended an easier transition to the adult service from age 17, without the need for a fresh assessment of the patient by the adult service. The Tavistock clinic told us that it was working with the adult service on this issue.246

247.Mr Huxter of NHS England told us that an extra £1 million had been made available for the Tavistock Clinic in the current year, to help cope with the need for additional capacity.247

248.Ms Ellison, the Public Health Minister, could not comment on the clinical basis for the protocols operated by the Tavistock Clinic but she underlined that the service specification and protocol for GIDS were under review and account would be taken of current clinical thinking and the views of stakeholders.248 Regarding this, Mr Huxter told us:

We will be going out for testing with stakeholders on the service spec before the end of November [2015]. That then goes back to the paediatric clinical reference group, which oversees this particular area. We will then go out to formal consultation early in 2016. Hopefully that would fit well with the timetable of receiving the report from the Committee and our being able to reflect that in our considerations.249

249.We acknowledge the hugely important and pioneering work of the Tavistock Clinic in providing help and support for gender-variant children and adolescents, and their families.

250.We recognise that there are legitimate concerns among service-users and their families about the clinical protocols which the clinic operates regarding access to puberty-blockers and cross-sex hormones. Failing to intervene in this way, or unnecessarily delaying such intervention, clearly has the potential to lead to seriously damaging consequences for very vulnerable young people, including the risk of self-harm and attempted suicide.

251.We also recognise that the clinic has a difficult balance to strike. As with adult Gender Identity Services, clinicians have ethical and professional obligations to ensure that treatment is appropriate; and they must pay due regard to the internationally recognised guidelines of the World Professional Association for Transgender Health. In addition, care must be taken that NHS resources are spent effectively and appropriately.

252.There is a clear and strong case that delaying treatment risks more harm than providing it. The treatment involved is primarily reversible, and the seriously dangerous consequences of not giving this treatment, including self-harming and suicide, are clearly well attested.

253.Accordingly, we recommend that, in the current review of the service specification and protocol for the Gender Identity Development Service, consideration be given to reducing the amount of time required for the assessment that service-users must undergo before puberty-blockers and cross-sex hormones can be prescribed.

160 NHS England is the operating name of the NHS Commissioning Board. It is constituted as an executive non-departmental public body. While it is autonomous in operational matters, it works to an overarching “mandate” set by the Secretary of State for Health. In addition to its role as a direct commissioner of some services, it also has a quasi-regulatory function in respect of Clinical Commissioning Groups, the local GP-led bodies which commission other types of NHS services.

181 NHS England is the operating name of the NHS Commissioning Board. It is constituted as an executive non-departmental public body (a type of arm’s-length body). While it is autonomous in operational matters, it works to an overarching “mandate” set by the Secretary of State for Health.

186 Health Education England is an executive non-departmental public body which provides leadership and coordination for the education and training of the healthcare and public-health workforce in England.

187 The British Medical Association is the professional association and trade union for doctors in the UK.